Soldier on or go Private Dilema!

I am relatively new to this group, but have been overwhelmed somewhat by the level of information and support given readily by really friendly and helpful members . Some of you will know my thyroid issues because of the nature of my questions , but I will explain for the sake of this blog. Since around 2005 I have witnessed my health deteriorate in several ways, primarily I believed this to be due to early menopause . My mother and her mother before her went through the change by the time they were forty, there is also a family history of osteoporosis and thyroid disorders, thyroid affects some of my aunties and cousins, whilst osteoporosis affects all five of my mother's sisters. Not a healthy bunch unfortunately. So at the age of thirty two I began with horrendous periods and the occasional bout of infections, sometimes feeling a little run down. I visited the doctor with infections when I realised they would not disappear with cystitis remedies and often mentioned my periods but was always advised the pill and nothing more. I declined this course of action. In my teens I had suffered with endometriosis, glandular fever and the beginning of a Sun allergy that has remained throughout my life, and have always shunned hormone treatments deciding not to stress my body further. I was in a stressful relationship and a stressful job and by 2009 when I left this relationship behind ,my health had begun to deteriorate further, periods even heavier, repeat eye and water infections, spots on face, dry skin , so after numerous visits to doctor and a few years later where they treated the ailments and not the cause I found myself armed with antibiotics on tap which do work on infections, and the agreement to try the pill (my periods now changed to much lighter and lasting longer) I began to pray for a miracle cure, because by now everything had worsened, my eyes are permanently dry and sensitive to the sun and cold, my skin so dry that it constantly itches I go through pots of e45products , I am ridiculously tired, at times I can almost sleep standing or sitting up! I have regular headaches, constipation is a nightmare, but the cold is a big issue for me, I am always over dressed with freezing hands and feet my hair and nails are brittle and I have zero tolerance for alcohol. There are other issues but I have blogged on enough. My main point being what does it take for a GP to take your word and treat the 'symptoms ?why should we have to go Private just to find help ? It doesn't take a genius to interpret borderline bloods and symptoms / family histories yet we all have to suffer negligence or find ourselves forking out again for a service we already pay for ,just to feel well. Good old NHS!

21 Replies

  • I am sorry you have had such a long history of ill-health. I am not medically qualified but all your symptoms appear hypo.

    This is a link and you can get lots of info.

    They should treat symptoms but appear not to know anything at all about them. As far as I understand they are told that the TSH is the "exquisite' test for detecting thyroid gland problems. What rubbish. Doctors trained in the 50's and 60's were taught clinical symptoms as there were no blood tests and you were given enough thyroid hormone to bring your good health back. You were dosed according to symptoms.

    Many people are forced to self-medicate as they cannot afford to go private which is a ridiculous state of affairs. The fact too that your family has a history of thyroid problems the GP should have seen the connection immediately.

    Some of the links within this link may not work.

  • Thanks for the link shaws, I will have a look in the morning . I am so worried because my mum's thyroid problem wasn't picked up until it had caused lots of problems, she was hyper though, does that make a difference in terms of hereditary factors I wonder ? She had the tremor and bulging eyes. We were oblivious to the problem but the doctors should have picked it up, they had to put her on warfarin because of the fear that her heart wasn't getting enough blood until the meds kicked in and then she underwent radiation treatment of some kind which has now sent her hypo. She is putting weight on and her face looks swollen , all the other symptoms too :( You mentioned self medicating, is that possible ? Where would one purchase the thyroxine or whichever medication ?

  • It is not uncommon for offspring to have the opposite issues - e.g. hyper mother, hypo daughter, hyper granddaughter. But, like so much else, anything can happen - including "no thyroid issues".

    Thyroid Eye Disease can, unfortunately, occur in hyper, hypo and "no thyroid issues". Though it is much more common in hyper.

    I suggest that the first thing you do is get hold of actual blood test results (the numbers and the reference ranges) and post them.

    This link should help if your surgery is not immediately helpful:

    It definitely sounds as if your mother is hypothyroid due to under-medication.

    By the way, if you click on the blue "Reply to this" under someone's response when you wish to reply back on a specific response, that person will get an alert email and so will know you have responded.


  • Hi Rod, these are my results received yesterday



    TOTAL THYROXINE(T4) 97 nmol/L 59 - 154


    FREE THYROXINE 13.7 pmol/l 12.0 - 22.0

    FREE T3 4.0 pmol/L 3.1 - 6.8



    Thyroglobulin Antibody 18.8 IU/mL 0-115(Negative)

    Method used for Anti-Tg: Roche Modular

    Thyroid Peroxidase Antibodies 7.7 IU/mL <34 (Negative)

    Method used for Anti-TPO: Roche Modular

    It would appear they lean toward hypo, but not enough for GP help perhaps. Going to make an appointment to discuss, but not holding my breath :-(

  • What time of day did you have the blood drawn?

    TSH is highest overnight so best time for a test to show elevated TSH is as early as possible (as soon as they open!).

  • This was a blue horizon test kit and taken at 8am.

  • :-)

    I think you are right and it is unlikely GP will offer anything - but definitely worth discussing.

  • Hi My consultants always told me that with medical problems it is essential to be under an endo, but make sure they are good.I was seeing a private thyroid doctor and told that this was not good, they were right as I then had a lot of endo associated things diagnosed.then.Actually also non endo too as a good endo knows all about the body as such a wide subject.

    I hope you r thyroid is soon sorted out.

    With best wishes,


  • Thanks Jackie, will ask GP to refer me when I go, just hoping it will be that simple, not really well off enough to frequent private doctors, mind you if a private endo perscribes thyroid treatment is that it? Will my GP then treat me as hypothyroid or supply the meds, or will I have to pay for private help indefinitely?

  • Hi Any consultant what ever as opposed to a private doctor will ( if asked) request all tests from the GP, they say what they want done.Also ,of course the meds.I see lots and have never found a problem with this .although GP is difficult. You always need a referral, but usually GP more willing if they do not have to pay ( although indirectly). I My endo charges about £150 first visit and then £90. These are very long consultations but she is very good. Normally an endo does all the relevant tests needed ( through the GP ), tells the GP what to prescribe , NHS She then continues to look after you until you are fine, then any relapse you go back. If they find anything else eg diabetes etc, that is all looked after on her instructions by the GP. You need a specialist who goes by how you are together with bloods. That is what all mine do, as good ( important)

    You see them as often as they think you need to or at any time you wish and an contact them through their secretary any time for advice.

    I have T3 from the GP, through my endo, and GP`s I have to have my armour on a private script ( as not on her list!!!). T3 is expensive .Any thing else should be prescribed, iron , B12, diabetes drugs, osteoporosis etc. All of which I have.

    I hope that helps you. GP`s think thyroid common, which it is , but the treatment if more complicated than a lot of them realise. With the correct treatment every thing health wise should be much better.

    Best wishes,


  • ah right, that clears this issue for me, I was worried that GP may not agree to advise/decision of private endoand thus saving up to visit one could still prove futile. I will give a different GP at my practise a try as a last resort just to see if they will treat me on these results/ symptoms and family history, and then push for referral if not! This was really helpfu, thanks Jackie. :-)

  • never forget you can insist on a second opinion from a specialist from outside your trust area [endo ] through the choose and book system from your gp-----he/she HAS to refer you------only problem being you need to research the best nearest to you and get there----we can use the nhs rules to our advantage if we are aware of the protocol that HAS to be used/observed....good luck and keep up the fight

  • Thanks Alan, I have my head in my laptop researching issues such as this :-) Not prepared to be a passenger with regards to my own health anymore! :-)

  • Hi F. That's a fairly classic story, one that rings a lot of bells for me.

    I can't speak for the NHS, but over here (Ireland) doctors treating on the public system seem (based on my limited experience - i've gone private and public at different times) not so subtly much less inclined to take account of what the patient has to say.

    Not sure what choice you have when you go public, but one of the biggest issues could be that should you get assigned an unresponsive and not very capable doctor on the public system it's possibly a lot harder to move to another within that system.

    This can be highly significant - in that it looks from my own experience and that of others here that it's probably best to try a doc, and move on quickly if the response is not satisfactory.

    It's presumably not impossible to get through - but there's some of us that have spent years trying to get specific doctors to take account of information and failed. That's by providing briefing papers and the like. The lesson may be that most of these guys actually dig deeper into the bunker of whatever their preconceived view is in this situation - they perceive patient input as threatening.

    There are some positive stories coming out of the public system: e.g. One strategy might be to do your homework - to see if you can find a way into the public system that would see you put in the hands of a know good doctor.

    If that's not working out then consider moving on.

    Be careful of antibiotics. They can be very important, and not all may take this view (although it's increasingly widely held) - but personal experience with long term antibiotics for chronic sinus and other infections caused by undiagnosed hypothyroidism suggests that they present a high risk of triggering gut troubles by unbalancing population of bugs in it (acidophilus and the like) which may lead on into stuff like leaky gut. In turn possibly triggering immune system problems and possible immune disturbances and auto immune disease...

    Wherever you go don't let the discussion become totally focused on just thyroid function. There's lots of other factors that can interplay with thyroid (e.g. as posted today by MW - have a good dig around the site.

    Good luck...


  • Hi Ian, thank you for the info and links, will have a read through!

    Re antibiotics, I only take them post sex, and with the exhaustion I have at the moment I don't think I will be overdosing or triggering immune system problems right now :-) I do take probiotics though, so hopefully I Will have a happy balance.

  • glad to hear your not going to be a 'passenger 'any more ----good advise from ian above ---remember that lots of other things can and do influence ALL conditions and for each condition to be treated correctly ALL factors HAVE TO BE ALLOWED FOR AND TAKEN INTO ACCOUNT-----otherwise you may well find another problem in a different area will show it's ' damn ugly face'======yet another fence to negotiate.....keep up with the empowerment will be thinking of you lots of luv and luck to ya

  • most certainly will do, and thank you Alan, you are very thoughtful! x :-)

  • Femme, Since testing is the obvious disinclination, instead of going private, get your tests done privately. I think they have a list of tests from Genova Europe or Blue Horizon on the site. It might be worth the investment and then have something to show your GP.

  • Hi heloise , you may have missed my results whilst scrolling down, I've just had them back yesterday from blue horizon, and they appear borderline hence problem :-(

  • If you're able to see another GP within the practice then it may be worth a try. Another option is to put in writing to your current GP that you're dissatisfied with his lack of treatment/lack of knowledge and state that you want referring to a Consultant.

  • Good point, will see how I come away next week, and if no help or referral, this will probably end up being the next feasible course of action. Thanks Cinnamon _ girl :-)

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